The Food Allergy Deniers

From the Allergic Living Archives. First published in the magazine in 2008.

As a magazine writer, Chris Koentges eats, drinks and travels for a living. The 31-year-old Calgary resident has what most people would consider a dream assignment: he samples delicious foods in fabulous resorts and exotic locales. Then he finds the right words to describe to his readers what he eats and what he sees.

There’s just one problem in paradise: Koentges is allergic to tree nuts. While he’ll sometimes let restaurants know that he can’t have nuts in meals he orders, mistakes happen about once or twice a year.

“I think, ‘Oh crap’,” he says of recognizing the flavor of nuts. He knows the next hour or two will be filled with intense stomach pain, hives and swelling.

His strategy? To wait it out. Cautious parents of food allergic children will be stunned to learn that Koentges does not own or carry an epinephrine auto-injector. He admits that if a food looks particularly intriguing and tasty, he’ll take a chance and try it. “It’s a pretty stupid approach to it, I am a stupid person,” says Koentges. “I’m kind of cavalier about things.”

In fact, he’s savvy, talented – and in good company. There are large numbers of adults with potentially life-threatening food allergies who do not carry auto-injectors, are not vigilant food label readers and are unlikely to be found wearing MedicAlert jewelry. Almost everyone knows someone – a colleague, a friend – who has been diagnosed with a food allergy but believes that he or she doesn’t need to carry an auto-injector because the allergy is “mild” or “moderate”.

These people lack the understanding of the disease to appreciate that symptoms are not consistent; that a mild reaction today could mean full-on anaphylaxis the next time (complete with problems breathing and a dangerous drop in blood pressure). So they go about their lives taking few precautions for the condition, blithely ignoring or dismissing the fact that they are standing on the precipice of a few mistaken bites or a sting, and unprepared if a big reaction does arise.

Surveys reveal that adults with food and stinging insect allergies are far more likely to take risks than parents would take with an allergic child. “We don’t see this behavior from parent to child. It seems to be an adult phenomenon,” said Anne Muñoz-Furlong, the former CEO of the Food Allergy & Anaphylaxis Network (FAAN, now FARE), who has been involved in allergy research. “We often say that teenagers are risk-takers, and they feel like they’re invincible. But I hear more stories of risk-taking from adults than I do from teens.”

New studies on adults with food allergies are telling. The qualitative research firm Fresh Squeezed Ideas Inc. examined patient attitudes about anaphylaxis for the company that markets the EpiPen auto-injector in Canada. Fresh Squeezed surveyed 650 participants, dividing them into two main groups – those a physician had diagnosed as food or sting allergic and those who were labeled “at risk”. The latter group had experienced symptoms clearly consistent with such an allergy, but had not been formally been diagnosed.

In the “at risk” group, only 4 per cent owned and carried an auto-injector, compared to about half of the diagnosed group. As well, 65 per cent of those “at risk” believed an antihistamine would always clear up allergy symptoms.

In FAAN’s 2004 survey of seafood allergy prevalence, auto-injector findings mirrored that “at risk” group. Only 8.6 per cent of those with a seafood allergy, which affects over six million Americans and is largely an adult affliction, had an auto-injector.

Fresh Squeezed Ideas’ research revealed a shortlist of the reasons for not carrying an auto-injector:

Most of the “at risk” group thought only people with “severe” allergies required one, and distanced themselves from that label;

A significant majority (in both diagnosed and at risk groups) also believed strongly in their ability to avoid allergens.

A lot counted on their family physician’s advice and if the doctor hadn’t mention a prescription for an auto-injector, the patient didn’t ask whether one was needed.

Several also expressed confidence that there was good awareness about food allergies in society in general and at restaurants – and drew the assumption that this was adequate protection.

“This is like the community that lives on the edge of the dormant volcano,” says John McGarr, managing director of Fresh Squeezed Ideas, of the adults at risk of anaphylaxis who don’t take precautions. “They know the thing can erupt, but yet they continue to live there.”

Koentges would fall into McGarr’s sub category of “diagnosed who don’t carry an auto-injector,” but back when he was a 5-year-old with a nut allergy that had just been confirmed, one was prescribed. “When I was young I did have an EpiPen, but we never carried it around,” he says. “If something happened, [my family] would call 911.”

In this he’s not alone either; McGarr and his colleagues found that many allergic adults cite the proximity to a hospital or easy access to 911 services as yet another reason not to ready themselves with an auto-injector.

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Like Koentges, Adev Ahluwalia is another whom allergists would dub “non-compliant”. A father of two and realtor working the hot Calgary housing market, he admits he doesn’t take his allergies “as seriously as I should.”

Of his auto-injector, Ahluwalia says: “I saw it the other day. But I don’t think it’s valid any more.” Besides, “I can’t remember if I’m supposed to punch it in my leg or, like in Pulp Fiction, stab the thing in my chest. I think it’s my leg.”

As a boy, Ahluwalia had minor reactions to cashews and pistachios, but only visited the doctor about his asthma, never about these allergy symptoms. Then in 2003, he had a significant allergic reaction at a friend’s 40th birthday party. He ate a chicken skewer, not realizing that there were nuts in the marinade. Soon his throat began to close, and he felt as if his chest and stomach were “knotted up.” He struggled to breathe.